evoassist Case Study - Nikki Barker
Nikki tells her story of Chronic Spinal Muscular Atrophy, Severe Scoliosis and the impact of evoassist
“I am 47 years old and have a progressive muscle wasting disability called Chronic Spinal Muscular Atrophy and severe Scoliosis, which means that I’m paralysed from the neck down and dependent upon my electric wheelchair, a vast assortment of specialist equipment and round-the-clock care, all of which combine to give me a good quality of life.
The degenerative nature of my disability meant that although I was a wheelchair user from late childhood, I didn’t start to lose the movement, strength and dexterity in my hands and arms until my mid twenties. I found this particular stage of my disability incredibly difficult to come to terms with as it meant that over time I eventually had to give up a wide assortment of hobbies, sports and crafts as well as losing the ability to do many of the simple everyday tasks which I had previously taken for granted.
Simple activities such as changing the channel on the television, increasing the volume on the Hi-Fi, drawing the curtains, answering the telephone or turning electrical appliances on and off, all became increasingly difficult, tiring and very frustrating. Fortunately with the introduction of a basic environmental control system I regained some control over my immediate environment and some much needed independence. As the frustration levels decreased I began to feel better within myself and more able to cope with the challenges one faces when living with a degenerative disability.
Since my introduction to environmental control systems, and during the last 20 years my physical condition has deteriorated significantly and I am no longer able to move with the exception of a little movement in my right hand thumb and limited head control. As my abilities decreased the range of features and equipment within my environment control system have increased. Not only has this meant that I’ve maintained some independence, it also lessens the load considerably for my parents who care for me 24/7.
I’ve been fortunate enough to have tried a variety of environmental control systems over the years and whilst they have met my immediate needs, I was becoming increasingly conscious that the systems weren’t evolving in line with other computer and technological advancements I was witnessing within the home, workplace and other facets of life.
Bizarrely I noticed that my able bodied friends had access to cutting edge technology and gadgets which made their lives less physically demanding whereas the design and function of the equipment I was using hadn’t significantly changed over the past 20 years. I found it incredibly difficult to reconcile the fact that environmental control devices for the able bodied were becoming more technologically advanced than those for people with disabilities.
It saddened me to realise that I was once again beginning to recognise feelings of frustration as my level of disability and increasing needs began to outgrow the systems I had in place at the time, and fears for my future independence became a regular source of worry and concern.
However, I did voice my fears to the engineers at RSLSteeper and this year I’ve been introduced to their very latest concept, evoassist, an environmental control app which can be downloaded on to an iPod or iPad and wirelessly accessed using a variety of input devices.
evoassist has been designed so that it can be individually tailored to the specific needs of the end user and with regard to people like myself, who have a degenerative condition. It can be easily enhanced to provide more functionality and adapted to suit different environments. The flexibility afforded with this new system is a positive step towards creating a system that can integrate with modern technology thus giving the user the maximum amount of control and freedom in any situation.
evoassist is much faster and more responsive than any other system I have tried and even though I rely upon the voice feedback most of the time, the screen on the iPad can be easily seen, even at long distances. I love the unlimited telephone book which for ease of use I have had divided into friends, family and business and being able to select speakerphone or headset has at last given me the ability to make a private phone call. It’s those little touches that have the biggest impact and make you feel as though the system has been designed to enable the user to have a good quality of life and not just enable them to perform a function.
I could wax lyrically about all the different functions and features I like on evoassist but that could take a long time and I imagine everyone will have their own favourite features depending upon how it improves and enhances their lives. In a nutshell I love the fact that I can put my own stamp upon how the system is set up and have it tailored specifically to suit me and my home which in turn means that I am getting the maximum benefit from my environmental control system.
I am comforted by the knowledge that evoassist will continue to meet my growing and changing needs, maintain my independence, be adapted to work within different environments and reduce the workload of my carers. I am also excited by the fact that it utilises cutting edge technology, namely the iPad and iPod and that hopefully, in time, it will enable me to operate other app’s available in the iTunes library such as turning the pages on an e-book reader app! The possibilities are endless and that’s the beauty of evoassist.
I’d hate to imagine what my life would be like without the ability to control the equipment within my environment and maintain a level of independence and this becomes all the more important as my disability advances. I can’t wait to see how future developments within computers and technology will impact upon my lifestyle; Thank you to the development team and engineers at RSLSteeper thus far!”
To find out more, or to arrange a visit with your local Assistive Technology Product Advisor, email or call us on 0113 207 0449 today.